NOUN

· A man, woman, or child of the species “Homo sapiens” , distinguished from other animals by superior mental development, power of articulate speech, and upright stance.

Personally, I believe there are many more qualities than this that make up the complex definition of a human being. Empathy, emotion, self-awareness to name but a few. What the above definition does not explain is exactly what is superior mental development? What is articulate speech? If you cannot stand upright are you less than human? Who, or what are we comparing ourselves to and who decides what makes us superior?

So many questions, and why do I ask?

My son is three years old, comparative to his peers, he does not have superior mental development or articulate speech, but he is human and he has Down Syndrome. So is he less worthy of life? Current UK law classifies Down Syndrome as a severe disability and therefore allows termination up to 40 weeks. The termination rate following a positive diagnosis of Down syndrome is around 92%, in some countries it is 100%.

Hundreds of thousands of pounds of NHS money is spent improving prenatal testing in order to detect genetic ‘abnormalities’. I understand that they can also detect other syndromes such as Edward’s and Patua Syndrome, which are life limiting conditions and to know of any pre-existing condition can be the difference between life and death.

The problem I have is when archaic information is given at the time of diagnosis from medical professionals and the media generally have a negative view on Down Syndrome. If you are given nothing but a gloomy account of what a child with DS will bring you, how can you make an informed choice?

You may think that I exaggerate but some midwives are actually taught to tell parents ‘it’s bad news’. Some women have been booked in for terminations despite stating categorically that their baby is very much wanted.

So let me tell you a little bit about my son, and then you can decide if he is less worthy of life, and a burden on society who brings me nothing but hardship and misery.

Celebrating a little boy’s life

I’m usually woken at around 6 am with some chirruping sounds coming through the monitor, as I slowly awaken this turns to happy chatter (he’s a mini Alan Carr), and he happily plays in his room until I’m finished showering and dressing at around 7 am. When I go through, he has pulled all his cuddly toys and some books into his bed and he is enthusiastically hugging them and pretending to read to them. I am greeted by an indescribable smile of pure joy, I undo his sleeping bag and hold my arms out. He toddles over to me and flings his tiny arms around my neck, holding on for twenty, maybe thirty seconds of bliss. He hands me a book and we sit on the floor while I read (and sign) the story.

We have breakfast, he scoops yoghurt into his mouth (and everywhere else) while he watches Peppa Pig. Squealing in delight and running around the room when the excitement gets too much. He signals to me that he wants the milk from my cereal, it’s teamwork, he finishes what I would normally waste. At some point whilst I’m getting ready he will jump on my knee, covering me in yoghurt, stroking my hair and bouncing up and down.

When we go out we go swimming, horse riding or perhaps to a wildlife sanctuary where he can interact with the animals. He wants to hug everything, from ducks to donkeys to bunnies to birds of prey. As you can imagine some creatures are not so taken with the cuddles, some relinquish willingly.

My son is amazing, he has a zest for life that I have never seen in any other human, he has a determination that I could only dream of, he is happy, he is healthy and he is loved beyond words. These are the bits that the medical world don’t see, that the media don’t want to see.

Yes, he can be a pain in the bum and sometimes a total nightmare, can’t any child? We have our challenges, I’m a single parent so that is to be expected. But the joy that this tiny person brings to my life, and all those around him, surpasses any negatives or challenges that we may encounter. He is my teacher, my inspiration and my guiding star. He is a human being.

He is more worthy of life than so many, but there is no prenatal test to detect who will be a murderer or paedophile, but sadly there is a prenatal test for an extra chromosome.

So please, don’t feel sorry for me or give me pity, Be jealous, because I get to see life through the eyes of a child with Down Syndrome, I get to see life through the eyes of Elijah with wondrous excitement and awe.

Elijah, you are my world, and without you in it, I would cease to exist.

It’s been a busy week, sales training for four days with lots of homework to keep us busy on an evening. I didn’t get to spend as much time with Elijah as I would have liked but I have to say the training was well worth it, from a career point of view and in my personal life.

Part of the training involved role-plays where you had to answer specific questions as a ‘victim’, and then answering the same questions as someone who has always taken responsibility for their actions.

The last question was ‘How would your life be better if you had always taken responsibility for your actions?”

It got me thinking and I struggled to answer. As everyone has, I’ve endured heartbreak, I’ve had some tough times and I’ve made a lot of mistakes. I also had some great times and think I’ve turned out a fairly decent person. But whatever I’ve done, or been through, good and bad, has led me to where I am today. And where I am is with Elijah. I’m his Mummy; I’m the person closest to him, the one who gets to tuck him in at night, who’s greeted with that amazing, cheeky smile on a morning. The one who comforts him when he’s sad and makes him laugh until he squeals. I get the worlds best cuddles, and cutest sloppy kisses. I watch him as he achieves his milestones and hold his hand when he fails. This is my life.

Because of Elijah I have done things I never dreamt I would. I’ve been to Leeds University twice to speak to student Midwives about how to engage with parent’s pre or post diagnosis. I’ve been to York University and have been invited back in the autumn, I’ve now been asked to speak to practising GP’s at Harrogate hospital. Who me!? I’m speaking with educated people, of amazing intelligence, people who I could only dream of being like. Yet they are interested in what I have to say. I’ve raised many thousands for charities and hosted a gala event. This wouldn’t have happened pre-Elijah, I didn’t have the passion or drive or the confidence. Elijah has given all this to me.
I hear so much negativity about Down Syndrome, I hear terrible stories of parents being almost forced to terminate pregnancies or being made to feel that their lives are over because their unborn child has been diagnosed with a condition that seems to instil such fear in people. So I have to show as many people as possible that life with Down Syndrome is amazing, of course it has its challenges but surely any child brings challenges and elements of fear. I have everything to thank Elijah for, I may have been living four years ago, but I certainly wasn’t alive, not really, not compared to now. He’s the reason I get up in the morning, the reason I smile, the reason I go to work, he’s my life and I wouldn’t have it any other way.

My point is that we’ve all had ups and downs, some worse than others, but you have to move on and keep faith. You just don’t know what is round the corner. Playing the victim won’t get you anywhere; it will just drag you down and make you miserable. I don’t want Elijah to ever feel like a victim, or ask why me? He is who he is and I love the bones of him; he has Down Syndrome, not a life sentence. He can be whatever he wants to be and achieve whatever he wants. Whatever type of job he wants, he can get, as long as he has the right encouragement and confidence in himself. And woe betide anyone in his life who tries to victimize him, or thinks that acting the victim is okay. You will have me to answer to, and thanks to Elijah, I’m a force to be reckoned with.

My son Elijah is now 18 months old; he is inquisitive, intelligent, mischievous and determined. He also happens to have Down Syndrome.

So what makes him different to a ‘typical’ child? Well he carries certain characteristics associated with Down Syndrome. He has the most beautiful eyes; most say they are almond shaped. I like to say they are moon shaped, because when he was born they were dark, dark blue like a moonlit ocean. They are slightly lighter now, almost grey/ blue but still stunning and full of wonder.

He has the sandal toe, which makes his gorgeous little feet even cuter. The big toe stands separate from the rest, means he should be able to wear flip- flops with ease! Lucky squidge, flip – flops always rub my feet.

In some areas he has been slower to develop, he’s not walking yet but can stand for a few moments if holding on to something stable. He won’t just let go, he turns to me and flings his little arms round my neck so that I can lower him safely down. At that point a melt, and I don’t mean just a little.

There has been no real communication yet although I think he is trying to say cat and duck and finally Mummy. I’m slowly learning Makaton, we both understand a few signs. Make the sign for milk and don’t magic a bottle in front of him – well be that on your own head. He has his own little signs that he uses, movements, a nod of the head or gesturing arm.

He excels at swimming, his teacher says he is advanced. He has his level 4 baby badge and is second youngest in his class. He can swim underwater, eyes open! I can’t do that! In fact I’m a pretty rubbish swimmer full stop so at some point in the not too distant future, he will be better than me.

He works things out, give him a toy and show him how to use it once, he’ll know how to use it the next day. He will even work out other bits that he hasn’t been shown.

He is incredibly alert, always watching what is going on. Especially in unfamiliar surroundings, he takes it all in and will happily go off and explore all the time keeping an eye on me so he knows where I am.

He’s trying to feed himself, he can feed himself certain foods especially biscuits. Watching him manoeuvre the last teeny bit of biscuit from his tiny fist to his mouth is just beautiful. The concentration on his face and the joy when he finally gets his prize is just amazing. Spoons are a struggle but he’ll get there. It just takes a bit longer to give him his dinner but I can live with that.

So yes there may be some delays, I could go on with the list of can’t do’s but why on earth would I focus on that? I’ll never put the focus on what he can’t do, that’s putting him at a total disadvantage. I focus on the ‘cans’, I focus on the absolute joy he brings to my life. Isn’t that what a mother does?So you see I have a child with Down Syndrome but I’m not downtrodden, hard done by and there is no need for pity. He isn’t some sort of punishment for something I did in a past life. What he is is a lesson: a very beautiful, joyous and valuable lesson. Pre Elijah I was judgemental, I had no understanding of people with disabilities, I used the ‘R’ word regularly. I would never have dreamt in a million years that I would be able to cope with a child with special needs, least of all as a single mother. But now? I don’t cope, that makes it sound like it’s not enjoyable. I love my boy: I wouldn’t change him for the world. People are drawn to him like no other baby I know, his smile is radiant and his giggle is infectious. Yes of course there’s an element of bias here but those who know him, friends, family and various group teachers will tell you he is a total charmer. He is loved beyond words. I honestly believe that if something happened to me a small scuffle would break out over custody. So you see, this little journey of ours isn’t easy, but my God it is worth it.

Before I take you down this merry path I need you to know two very important points. Firstly, I’m not a medical expert, despite watching years of E.R and Casualty. Much to my dismay it takes years of study, and I don’t mean studying the T.V. Secondly I am not here to judge. I have not walked in your shoes. I’m here to tell you what I did and why, my reasons, my situation.

I also apologise as my memory is slightly hazy so I can give you rough time scales only. Baby brain is alive and well in my head and has been for some time. Now that is medical fact, as far as I’m concerned.

I found out I was pregnant at around 6/7 weeks and was hastily booked in for my first midwife appointment and scan. I was beyond excited although already the cracks in my relationship were beginning to show; I knew I wanted this baby.

I think it was at my first appointment when the midwife offered me pre-natal screening and gave me some leaflets to read through. I read about the two stages of tests. The first a simple screening test or nuchal fold test where an ultrasound measures the amount of fluid at the base of the neck. Babies with Down’s tend to have more fluid than a typical baby. The results are not accurate and will only put you in a low to high-risk category, not a definite answer. The second is either an amniocentesis or chorionic villus sampling (CVS); these are diagnostic tests and carry a risk of miscarriage. An amnio test (the one I was offered) involves taking a sample of fluid from around your baby within the womb. Yikes!

I flicked through the information and signed the form to say no thank you. My thought process was that due to my age (38), I was pretty sure I’d be put at high risk. Being in this category would almost certainly put me under a lot of stress; I already had way too much stress in my life due to personal circumstances. I definitely didn’t need any more. I wanted this little bub; I didn’t want to put it in any danger of miscarriage due to stress or any tests. As far as I was concerned it was wanted no matter what the results would be. My (now ex) partner and I disagreed, to him forewarned is forearmed; to me ignorance was bliss.

I say this as there is a lot of negativity out there associated with Down syndrome, I’d also like to add unnecessarily so. It’s scary! Had I been put at high risk and googled Down syndrome, I would have been petrified. I have no idea what I would have done. So, much as I say nothing would have made a difference, I honestly do not know, ignorance was definitely bliss. I knew very little about Down syndrome, what I did ‘know’ was pretty much a generalised view of adults with Down’s being reliant on carers and needing round the clock care. Being a burden on their carers and society with little hope of employment or any sort of a ‘normal’ life. Crazy! It’s not true, far from it. Yet a lot of information on line and in the media will lead you down this route.

My little man was born with Down Syndrome and he’s perfect. He’s more perfect than anything I could have wished for or dreamt of. My favourite quote sums up how I feel about him perfectly. “And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”

He has Down Syndrome and I wouldn’t change one wispy hair on his perfect little head.

There is of course, another side to prenatal screening; in my ignorance I did not realise it’s not just Down’s that they test for. There are other conditions, Edwards Syndrome (Trisomy 18) and a variety of heart conditions that can also be detected. Finding out information like this can be vitally important. If your baby is at risk you would be monitored appropriately, you would be directed to a neonatal unit with the specialist care required for whatever condition your baby may have. There are reasons why testing can be important and in no way should anyone be made to feel guilty for having tests. What I struggle to understand is when a baby is terminated due to a certain condition. It’s not perfect so lets erase this one and try again. That hits me hard, probably because without what I know now, it could have been me. And that is scarier than any test result.

This was my response to eugenicist Richard Dawkins after he tweeted that women were morally obliged to abort any foetus with Down Syndrome.

Dear Richard Dawkins,
Yet again I find myself writing another letter to another ignorant, narcissistic fool. When I saw the article reported in The Independent a couple of people asked if I would be responding. My first thought was why? You don’t deserve my time or my energy. But my boy does. He deserves everything and more, most importantly he deserves his life.
Apparently you are an educated man, yet you make comments about something clearly you know nothing about. Why should foetuses with Down’s be aborted? On what grounds do you base these comments? More importantly who made you God? You are not a woman, you are not pregnant, nor have you ever been. You have never grown a life inside of you, nurtured it, cared for it and protected it until the day it is born. That foetus, any foetus, then becomes your baby, your child, your flesh and blood. You hold it for the first time, and fall completely in love. You don’t see any medical condition; you see your son or daughter gazing at you.
My son is nearly ten months old. Hey guess what? He has Down’s Syndrome and I can tell you from the bottom of my heart that I would not change a single thing about him. He is my teacher, my inspiration and my guiding star. He has more compassion in his tiny toenail than you could ever hope to have. He exudes love and innocence. And he is loved, he is loved beyond words.
At almost ten months he has almost mastered sitting, he’s still a bit like a weeble but we are getting there. He explores the world with this beautiful, tentative stroke, he reaches out to touch my face and my heart melts. His smile doesn’t just light up a room, it could light up an entire mountain, and that laugh. Oh that laugh of his, it is the most beautiful sound I have ever heard. Tickle him, play round and round the garden and he will laugh for you too.
But you don’t see any of that, you are incapable. You think you know about life and emotion; let me tell you, you know nothing. Your views are archaic and cruel. You are just another sad, narcissistic old buffoon. So please, take yourself and your comments back to the dark ages where they belong. Humans have somewhat evolved since outlooks like yours were common place, it would appear however that evolution left some rather far behind.
Regards,
Wendy Puckrin

As many of you know my little man, my little hero, has Down syndrome. I found out two days after he was born and we remained in hospital for three weeks. However that story has already been told, we are now onto a new chapter.

Elijah is now 11 months old and life with him is a constant education. I am always told how much slower he will be than ‘typical’ babies of the same age. So what can Elijah do? He can sit, he’s a little wobbly. I wouldn’t walk off and leave him sitting as he does have a tendency to get excited, wave his arms around like a lunatic and topple over. He commando crawls and can get up quite a speed; he’s found the cat flap so I need to watch that he doesn’t make a break for freedom. He gets on his hands and knees, rocks backwards and forwards, beaming with happiness, then flops forward and commandos himself off on a new adventure. I’m fairly certain he would win gold at raspberry blowing if only the Olympics would accept it as a sport. He explores the world with a gentle, tentative flick of his fingers, this turns into a stroke and then quite possibly a grab. Ask my cat, she knows. Oh, I know too, I’ve resigned myself to the fact I’ll most probably be bald by the New Year. He laughs beautiful, beautiful giggles. A game of round and round the garden, the anticipation and the final tickle reduces him to a giggling mess. He can hold onto the side in the swimming pool and I can let go of him, he kicks his legs and waves his arms like mad in his own swimming style while I hold him. He knows what kiss means and will kiss (lick) me. He babbles, he pulls himself to a sitting position on my low coffee table, he blows raspberries on my cheek, he touches my face and melts my heart and he smiles. He barely stops smiling. His cheeks must hurt. When he smiles his entire face lights up, I have never known anything like it. It is like moonbeams have collided with sunshine and radiate from his whole being.

Maybe he is a wee bit slower, I don’t know how far along he would be if he didn’t have DS. Does it bother me? Occasionally, sometimes I compare him to other babies far younger than him, seemingly doing much more. Then again some babies spend all day screaming, some babies spend all night screaming, some babies are moody. Not Elijah, whether that is down to DS or not who knows, he has his moments but the majority of the time he is a pleasure to be around. Yes it takes a bit more work; I have to spend more time with him doing physio or play/ education. Yes he has more medical appointments than most and more risk of heart defects, hearing issues, sight conditions and a variety of other medical conditions which so far we have escaped. As a single mother it can be tough, but he is worth every bit and more. My point is that there are so many negative connotations with DS. If I had found by pre-natal testing I would have been terrified, I would never have dreamt I could cope. But I do, and I love, I love the very bones of him.

So do I wish he didn’t have Down’s? Absolutely not. By asking me that you are asking me if I want a different son. He may not be what society deems as perfect but in my eyes he couldn’t be more beautiful. Without DS he wouldn’t have those gorgeous almond shaped eyes, those eyes that make him look like he constantly has mischief on his mind. Those eyes that blink at me, full of wonder and awe. I love every inch of him, from his highly boopable button nose, to his stubby fingers to his slightly wonky toes. He has made all my dreams come true and more and I could not be more proud of him. He is most definitely not stupid; there is a vast difference between being stupid and taking a bit longer to learn something. He has determination by the bucket load, nothing will stop him. So he will get there and I will be there every step of the way. I’ll catch him when he falls, I’ll make sure he gets back up again. I’ll do my best to protect him from the bigots and prejudice that is unfortunately prevalent in this world. And I will do whatever it takes to make sure he is happy.

He has taught me compassion and acceptance in a world with so little. He has taught me patience and understanding in such a fast paced world. He has taught me that life is not about where the next party is or who’s out in town tonight. But most of all he has taught me about love, pure and unconditional. He is the love of my life and without him I would quite simply cease to exist.

My son, my Elijah, was born on 30th October 2013. As the midwife stated, he was just a dot at 5lb’s 12.5 – although I wanted to punch her when she first said it, he certainly didn’t feel like a ‘dot’ as he exited my good self.

I was a blur of confusion, exhaustion, lack of sleep, emotion and everything else as he turned blue and was whisked away while the midwives muttered something about Down’s syndrome.

It was around 3am when I finally climbed into bed, I’d had a shower, which left the cubicle looking like a scene from night of the living dead and I felt like I had been run over. Not much sleeping was done, I know at some point I slept as my sister said I snored, I know at some point she slept as I heard her snore. My head was awash with thoughts. Not all of them good. Was my perfect little man not perfect after all? What was Down’s syndrome – what did it really mean?

I received the test results two days later, it was confirmed he had Down’s. They kept asking me if I had any questions, I had no idea what to ask. It was like the questioning part of my brain had been removed. I decided that until we got ourselves out of hospital we would take one day at a time. Unless life threatening I didn’t need to know about his condition.

I was confused, terrified, happy, elated, and sad all at the same time. There were many times in the hospital that I would sit and cry; tears would roll down my face, exhaustion, the baby blues, the diagnosis, the frustration of being stuck in hospital. I could never really pin point why I was crying but I guess it was a mixture of it all.

My little man was so helpless lying there; he went through so much in that hospital. His feet were like little shredded ribbons where he had blood taken on a daily basis, he was taken to Leeds for heart scans, he had a cannula, was fed oxygen, tubes for feeding, heart monitors. The lot. It broke my heart but his strength of spirit showed me what a little fighter I had. And he deserved a mother who would fight for him. Holding him tightly I would gaze into those dark, dark eyes; they were like pools of water, so blue and so beautifully moon shaped. I could lose myself in those eyes. At times I would miss him, even when I was in the same room as him. Even holding him I couldn’t get close enough to him, it was like I needed to climb inside him. I knew he would change my life; I just never had any idea how much.

After seventeen days on special care we were allowed home, and that’s when our adventure really began.

Since our ‘release’, he has gone from strength to strength and because of him so have I. He is my teacher, my inspiration and my guiding star.

Every consultant wants to tell me how much slower he will be and I want to punch them square on the nose. Slower than who? Every baby is different, every baby develops at their own rate, whatever he does, whenever he chooses to do it, I will be proud and I will hold his hand every step of the way.

My boy has Down’s syndrome and I wouldn’t change a hair on his head. There are many things that I have learned on our journey. At times I get sad when I compare him to ‘typical’ babies. Sometimes much younger and doing so much more than him. But then I think who is to say that if he didn’t have Down’s he would be doing any of these things. No one knows. And for me, if he has to work that little bit harder to do stuff then it is all the more rewarding. Nothing easy is worth doing.

As the months go on I am also slowly learning that all the hopes and dreams and fears that I have for my little boy are the same as any mother. Will he do well at school, will he be bullied, will he be able to stand up for himself, will he get married and most importantly will he be happy? You see there are no guarantees in this world, any mother wants the same thing for her children, maybe I need to worry more than most, and maybe I don’t. No one knows, but I do know that as long as there is breath left in me I will do my best to make sure that he is happy and he achieves his goals.

My son makes me proud every day, every little milestone that he achieves makes me want to burst with pride. Every giggle, every raspberry, every time he reaches out to touch my face and explore this new world, my heart melts. Through him I have found an inner strength I never knew existed. I am on a mission to show the world that there is nothing to be scared of. His diagnosis is merely a medical condition. First and foremost he is Elijah, he is a baby, and a very beautiful one at that. Through this Facebook page I have met and spoken with some wonderful people, some with first-hand experience, and some without, some taking those first steps on their own journey of the same kind – dipping between the highs and lows and not knowing where to turn. I’m humbled by the experience, there are so many wonderful people out there, and because of my boy, I get to speak with a huge percentage of them.

My boy will never be a disappointment to me; I can only hope that one day he will be as proud of me as I am of him.